We're home!

We are finally home after 4 looooong days at the pediatric unit in the hospital. Maximus did not do well last night. Yesterday I only had to use the NG tube once! I was so happy that he was making progress and was hoping to not have to go home on it. The Dr was hopeful too, but then last night he just wouldn't eat again. I don't know what it was. He has been really stuffy and snotty too so I have been worried about him possibly being sick. So the Dr ordered an RSV test, we just got those results and they are negative! YAY! Glad about that. He has gained 3 ounces since being in the hospital. So he is on track and doing good at gaining weight, which is what we want, but we also want him eating without the feeding tube. We got the results back from my breast milk and the calories are above average at 32 cal. so the Dr said I didn't need supplement the formula anymore just keep using the banana's and up his intake to 75 ml every 3 hours. Other tests for influenza and other flu's came back negative as well. I'm happy he is not sick. They did send it in for a third testing to make sure again. Today Maximus didn't do so well. I have been worried about him a lot. He's just not himself, sleeps a lot. And he has been getting really upset crying a ton. Like he is in pain but we just don't know whats wrong. I hope its just a phase or that he has been stressed and sick of being poked and bugged all day and night.

I've also decided to go with my mom instinct. I don't think being on this strict 3 hour feedings and 75 ml's is the best thing. I also don't want to give up breast feeding completely so I am still going to do that a couple times a day, bottle feed him at least the 70 and still keep as close to 3 hours as I can. I think as long as he is gaining weight and staying on his curve he will be fine. I hope anyways.

Also we got the results back from the DNA genetic testing and it is for sure positive for Goltz Syndrome. So that makes him the 5th reported male world wide. Kinda crazy. I'm happy to have the results and that we don't have to do a skin biopsy on him.

Anyways, it's late and i'm so exhausted (I wish I would have taken a picture of what I had to sleep on for 4 nights!) so thats all I have for now. Gotta go try and feed the little man and then try and catch some Z's before the next feeding. Thank you so much to all of those who keep us and Maximus in their thoughts and prayers, they are greatly needed and I am forever grateful for you. Lets just pray he gains enough weight by Thursday next week so we can get this feeding tube out! Please!

P.S.
Can I just say that I have the bravest little guy in the world? I might be biased but seriously? I could not go through what he's been through! But I would in a heart beat if I could take his place. He's so tough. I love him so much.

Sleeping soundly in my hospital crib

Sleeping again in grandma's arms

Going home! Yay!

Home sleeping on mom and dad's bed, SO HAPPY!